BLog

Warrior Wisdom

From Bullied to Beauty

From Bullied to Beauty

I was bullied from a very young age. On top of that, everything I tried out for, I was told I wasn’t good enough. I had one happy place-theatre! My symptoms began in August 2017-I had nightmares that theatre would exclude me as well. Then September 1, 2017, those...

Long Road to Rare

Long Road to Rare

I have had issues since I was a child. I was sick often. As I got older and went to the doctor by myself, I was called a liar. Nurses refused to believe I had a sinus infection once a month; that I had a respiratory infection every few months. Then one year I had an...

The Long Road

The Long Road

It was Christmas 1999 when I got bitten by a cat, by January 2000, everything started, the joint pains, the persistent fever, and the swollen lymph glands. Orlando has no pediatric rheumatologists so absolutely nobody had the slightest clue what might be happening to...

Don’t give up

Don’t give up

Prior to becoming unwell in 2004 I was healthy, fit, full of beans and studying Outdoor Education at University with the career ambition to become an adventure therapist (working with young people in an outdoor environment to help support them through difficult times...

Feel Something, Say Something

Feel Something, Say Something

I come from a hyper-stoic Polish family by way of Chicago. You. Do. Not. Complain. Period. So decades of “potty problems” bred inattentiveness in class, crappy (NPI) grades and therefore a 3rd rate secondary education. That amounted to jobs I could manage as opposed...

Two sides to a face

Two sides to a face

I was born with Sturge-Weber Syndrome, with a large portwine stain birthmark covering the left side of my head and neck. Lots of extra blood vessels resulted in glaucoma and visible differences in my left eye. At 10 months, like many with SWS, I began to have...

Chronically Jessica

Chronically Jessica

My symptoms started really showing up in the last two years of high school. But my doctor at the time just though it was all in my head. So it wasn’t until after I had finished high school and moved out that I really was able to start looking for real answers. I went...

You Are Never Alone

You Are Never Alone

Hi! I'm Jordan and I'm an I.T. Technician from Alberta, Canada. I was 21 years old when my world quite literally changed overnight. Up until that point I had been completely healthy, and had never experienced anything other than a common cold. I distinctly remember...

Fighting through the pain

Fighting through the pain

I started experiencing issues with chronic joint pain in my teens. I’m 31, and was 29 when I got my diagnosis. I lived through my early 20s with so many doctors and people telling me I was way too young to have the joint pain and stiffness that I had. They thought I...

Listen to your gut instinct.

Listen to your gut instinct.

Hi my names Chlo ever since I was young I’ve had disabilities as mentioned above but not chronic pain. When I was 10 years old we went to see my regular paediatrician as I was having verbal and motor ticks and got a lot of joint and muscle pain which we put down to...

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